The things we do for the people we love

On some days, like today. I find it hard to come to terms with knowing that my little boy isn't just disabled. He is severely disabled. My little boy is severely disabled. He may never walk or talk and most likely, he will be wheelchair bound. He has the developmental age of a 6 month old. Mango will be 3 this June. He will be 3 years old and he is developmentally like a 6 month old. He was a 6 month old when he was 1 1/2 years old and when he was 2 year old and now when he is 3 years old. He hasn't moved. When he actually was 6 months old, he was developmentally still like a newborn baby. 

I just want to scream and pull my hair out. Not for myself but for Mango. For a boy who struggles everyday with things that we take for granted. Things that I take for granted everyday because I'm too consumed with taking care of all the things he has been disadvantaged of and things that come to us so naturally, like muscle movement or vision or hearing. 

I am also scared. I'm scared for me. I'm scared that my life will be too short or if I will get a terminal illness that takes away my ability to take care of my children. I'm scared of my heart breaking too many times, it decides to give up.

I'm scared for Mango. I'm scared for his future and what he will be in the next few years. I'm scared for when he turns 5 and he will have to go to school. I'm scared of him going to school. I'm scared of how he will be treated. I'm scared of how the world will treat him. I'm scared that his heart will hurt. I'm scared he will meet horrible and arrogant people that will leave a scar on his heart that I can't mend. I'm scared of losing him. I'm really scared of losing him. I am also scared that he will never know how much I love him. I'm scared that he will never know that I would give my heart to him if he ever needed it and I wouldn't think twice. I'm scared of a life without my heart because he is my heart.

I'm scared for plum and what his life will be like. I'm so scared of how his heart will break a little when he meets mean people that will give him a hard time about having a brother with a disability. I hurt for him knowing that he will have to face these things in life. I'm scared that he will know what it means to hurt everyday to see a loved one struggle with the things that we take for granted in life. I'm scared for his heart.

My dearest husband, who has been the strongest out of all of us. I'm scared that one day he will break and I wont be strong enough to hold him the way he holds me but I sure damn will give it everything I have. 

How do you protect the ones that you love from so much pain in your life. When all you want for the people you love is happiness. If the price I had to pay was my life to give my loved ones true happiness. I would do it. I want them to never know what pain and grief feels like. I want to protect them from all the evil hearts that are searching to break something. How though? How do I do it?

Chromosome 18 (Distal 18q-) - PART ONE

As by now, if you have been reading my previous posts, you will understand a little bit about chromosomes. If not, heres just a short summary of what we need to know for this post.

1. Chromosomes are named by numbers. Starting from No. 1 to No. 23
2. There are three parts to a chromosome. The 'p arm'/ 'short arm', the 'q arm'/ 'long arm' and the centromere which kind of acts like a body part holding the arms together. 
3. Each chromosome from starting from the centromere has a something called a 'g-band' that is identified by a given number. The smallest number starting with the g-band closest to the centromere.

I don't remember much from the day that the geneticist invited us into his office to break the news to us about Mango's chromosomes disorder, just very brief flashbacks of the 2 hours and 30 minutes we spent in that office with him, while we tried to make sense of it all. We still walked out not knowing what to think. 

He started off by explaining chromosomes (previous post), then the numbers the order of the chromosome. Then he explained to us what balanced and unbalanced chromosomes are (previous post) and how common it is for people to have a balanced translocation in their chromosomes and never know about it their whole life because it never affected them in anyway. He then told us that there was a deletion in Mango's 18th chromosome and a duplication in his 14th chromosome.

In Mango's 18th chromosome, the deletion is closer toward the end of the chromosome which is why it is named 'distal' 18q-. If the deletion was closer to the centromere (the body) it would be called 'proximal'. 

A child with more than an distal 18q deletion (unbalanced translocation) can face different type of issues. Some could be 18q related and others could be symptoms from the other chromosome involved. 

Here, I will only be mentioning Mango's affects from the 18 chromosome and not all the symptoms related to distal 18q deletion. 

Just a note before you keep reading.
Chromosome abnormalities / disorders all have very similar symptoms.

Global Developmental Delay:
A diagnosis of global developmental delay is given when a child is slow in progression with things such as growth, weight gain, milestone reaching (head lifting, rolling, etc.), social interaction (e.g. making eye contact) and many other things. Keeping in mind that the word 'global' covers a whole range of things. 
Two children can both be diagnosed with global developmental delay but be delayed in  totally different things. 

Mango has sever development delay. Over the past two years, our paediatricians have never been able to tell us where on the charts of development our Mango is. The excuses given are always that they can't determine because we don't exactly know how much he sees or hears or understands. So basically they don't know. All that they know is that he is extremely delayed.

As a mother however, I can safely put him around the 4 - 6 month age. He rolls, laughs, babble a little and all these small things that I try not to miss during the day. Small progress is better than no progress.  

Vision and Hearing:
Vision and hearing problems are a common symptom to have with 18q-. The eyes may be misaligned which is called (strabismus) or move involuntarily (nystagmus) or a change in the optic nerve (the nerve that carries signals from the eye to the brain). 

Some individuals have hearing loss because their ear canals are narrow or end before they reach the ear drum. Cleft palates may also contribute to hearing loss. Other people have changes in the nerve that moves sound from the inner ear to the brain. Ear infections are also common.

A few weeks ago after Plum was born, Mango went under anaesthesia to have a hearing test. It was determined later on after the test that he has a mild to moderate hearing loss. This means that he would need hearing aids because he can't hear the softer sounds that we make in a sentence such as 'sh', 'ch' or 'th'. 

This was good news because somehow Pappa Bear and I were expecting him to have a severe hearing loss. Funny how the smaller things in life are the things that make us happy the most.


Heart:
Heart defect's are common with children who have any type of chromosomal abnormality. The may have a hole in their heart, changes in the heart valves as well as the major blood vessels that connect to the heart. 
As babies, Doctor's usually have an ultrasound of the heart done to look for any defects.

Mango currently has a heart murmur. This means that the valve that connects his lungs and his heart is a little bit narrow causing his heart to work a little bit harder than it should. This is not a big concern. His heart is coping very well!

Orthopaedic:
Foot abnormalities are actually quite common. Either from clubfoot or vertical talus (rocker bottom) feet. They may also have bow-leggedness also known as genu varum.

They may also develop scoliosos which is a curve in the spine. All of these problems can effect the way a person walked or stands.
Most of the time, these defects can be helped with splints, surgery, therapy. And lot and lots of hope and prayers!

Mango was born with vatical talus (rocker bottom feet). This is wear the feet turn outwards. It was quite severe and when the orthopaedic surgeon looked at Mango's feet, he told us that  we could try  physiotherapy (lots of stretching) and try casting but in the end we would need to operate to release the muscle. Months later and weeks before the appointment that we were going to meet with the surgeon to make a date if we needed for the surgery,  I started to take Mango to a chiropractor. I can't tell you if this worked or not but it seem to be the only thing that we did differently in our lives. We went back to the doctor, had x-rays done and we were told that his feet looked like they had never been rocker bottom in the first place. His ankle bones were a bit higher than usual but all was good. Our smiles and expressions of happiness couldn't have even live up to the joy that we were actually feeling at that moment. 

Gastriontestinal changes:
Babies and children may suffer from reflux. This means that the barrier between the stomach and the oesophagus is still immature and cannot keep the acid/food from the stomach down, which brings the food back up. This can cause pain, being unsettled and vomiting and sometimes projectile vomits. It is also said that the feeling of reflux is like heart burn. (My poor Mango!)

Hernia are also common. A hernia is when some of the intestine push through the abdominal muscle. This can be corrected through surgery.

Mango suffered reflux since the day he was born. With all the feeding and weight problems that we were facing even a little bit of vomit was a big loss. Mango's projectile vomits would reach the other side of the wall and after every projectile vomit, he would go limp from exhaustion. We kept him upright most of the time and had a pillow underneath his cot mattress so he could be a little elevated while sleeping.

Mango also had an inguinal hernia and a belly button hernia. His inguinal hernia was fixed through surgery and his bully button fixed itself. 

To be continued....

NOTE: The information on this blog is just something I have learnt in my time as a mother of a child with a genetic disorder. I am not a qualified doctor or therapist, etc and do not claim that I have the knowledge to be. The information is merely for my family members, close friends and other parents with similar issues looking for other families and their experiences.

Reminder - I am important too

This is a post for me. A written post, to myself. This, is also an attempt to salvage what ever is left of my sane mind before I completely loose the plot. 

This moment right now. I can see the future going down hill from here. I feel like I'm trying to catch myself from drowning in an ocean of tears. I guess the thing is, that I knew this moment was coming and I just had to prepare myself for it to come. Except I'm starting to question myself, if this will be the cycle of my life. I take things on, not thinking how much it will weigh me down and then I sink. Is this what it means to take on one day at a time? Is it really what that means? Because if it is, then it's taken me two and half years to realised that somehow, as right as it seems, its so wrong. Except there is no other way.

The mother in me, the mother that I am, I can't allow myself to drown in my emotions when my babies need me. I think the past few months of Mango's appointments and hospital stays aren't only getting to me but to him as well. He has been so needy and cranky while Plum is teething crazy and extremely clingy. 

Today, I hit that brick wall, that I could see from a mile away. I hit it so hard, I couldn't take the impact of the crash. I put the kids down for a nap and the moment I stepped out of their room, it felt like my heart burst and I went crashing to the floor. I flooded the house today. I flooded the house with my grief, my guilt, my pain and mostly... my tears. I couldn't catch my breath, holding onto wall for support. What have I become? Where have I gone? Where am I?

I don't know what it was that got me back on my feet. I just somehow did. So much has happened in such a short period of time and I haven't even found time to allow myself to take it all in. I just kept going. So today, of all days, one of the busiest of all, my soul couldn't take it anymore and broke.

This is a reminder for me. That I come first too.
How? I have no idea. I can't even find time to go to the bathroom, how am I supposed to find time for myself. I don't even know how to take time to myself. How do you have alone time? What is it? What do I do, exactly?

I have, spoken to all those mother's out there who have a children with additional needs. So I can't say that I haven't been warned about the hard times that will get to me. I just have to keep reminding myself that it will get better. 

I want to take this moment to reflect on everything my family and I have been through. I want to soak it all in. Every joy and hurt that I have just pushed aside. Every bit of stressed that I ignored and told myself, it wasn't real. This is my moment to take it in so tomorrow I can stand tall again and be the best mother I can be. 

For all the mothers who have children with additional needs and myself, who are reading this. I want to tell you that you are Great. You are Strong. You are Wonderful and you have done so much great without even knowing it (because really, when do we have time to look back to see what we have done. We just keep moving forward). 

We are important too. 

We are our children's voices. And to make our voices heard, we need to hear our own first. That voice inside our head that keeps reminding ourselves to take a break, have a coffee, have a walk - because when we come back we will have stronger voices and with those voices we will move mountains. 

Most of all - this is a reminder for me. 

______________________________________________________

Dear Me,

Please read when you are feeling crap. Remember, we don't want this happening again. For everybody's sake.

From Me.